Along with EDS, Alexa also suffered from Autonomic Dysfunction, Chiari Malformation, Seizures, and was having blood clotting problems.  Her fight was a long and hard one.

Alexa was one of the strongest people I know.  She never complained, no matter how bad things got.  She was always upbeat and positive and had a smile on her face.  She was there for me when I was starting my journey in finding a diagnosis for myself.  She helped me through the roller coaster emotions that come when you finally get that diagnosis and understand what it entails.  We laughed together, we cried together.  I take solace in knowing that she is no longer suffering and no longer in pain.  I will miss her greatly and she will be in heart always.

 

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.

So, what is the reasoning behind this new found energy?  Well, a few months ago a friend of mine educated me about Mitochondrial Diseases and how I seemed to fit the criteria.  I read up on it and turns out, I really do fit the criteria!  On one of the websites, The United Mitochondrial Disease Foundation, there is a section entitled “Ask The Mito Doc” where people can post questions to Mitochondrial Disease specialists. On this page, a doctor basically said that if a person responds to the “Mito Cocktail,” the current treatment for Mitochondrial disease and consists of several vitamins and supplements, that there is a good chance that they would have some type of mitochondrial disease.

What is Mitochondrial Disease, you ask? Here’s a short description provided by the United Mitochondrial Disease Foundation:

“Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.”

Still with me? If you are, awesome!  Since I enjoy having this new found energy combined with learning about Mitochondrial Diseases, I have decided to look more into it and see about getting tested.  That way I may be able to find an even better course of treatment with the help of dr’s and nutritionist who specialize in Mitochondrial and Metabolic Diseases.  In turn, transforming my little walk around the block into a walk around the neighborhood!

The “paralysis” in my gut has gotten so severe that my dr is recommending surgery.  I’m not sure all of what goes on during this surgery and I decided to take it one step at a time and see what the tests show.  If the the tests show that there is an issue with my upper GI system then surgery is out of the question.  Again, because I am taking it one step at a time, we have decided to cross that bridge when it comes.

I’ve also decided to get a second opinion, it couldn’t hurt.  Perhaps there is something he will think of that my current specialist didn’t think of.  I am also calling up my pain doctor and asking why he is so opposed to a pain pump.  See, I take a lot of pain medication.  A few are narcotics, which can have many side effects one affecting the GI system.  Through a pain pump, however, rather than orally, these side effects don’t happen.

For now, I am willing to try whatever I can tolerate in lieu of surgery.  At the moment, I’m attempting a mostly liquid diet to see if that alleviates some of the pain and discomfort.  Let me tell you, it’s hard!  I have to make sure I get in enough calories and nutrients.  Today I started this new regime and by 9pm I was starving!  I ended having an English muffin with some Laughing Cow cheese and that was satisfactory at best.  Sigh….  I hope it’s worth it!

So, how does a person like me with a crappy memory and somewhat disorganized way of doing things keep track of all this? Well, firstly, Good Reads.  Good Reads is a website where you can add books to various list such as: read, to read, currently reading, etc.  You can also create your own lists to further organize your books such as: fiction, non-fiction, sci fi, historical fiction, etc.  As well as logging your books, you can also rate them, and leave comments about what you liked or didn’t like about each book.  There are groups to join which are basically online book clubs with a monthly book to read.  It’s a fantastic site, really!

The other way I’m going to keep track is with the Moleskin Passions Book Journal.

This journal is pretty awesome.  Some might think that it is completely frivolous, and they might be right. However, I think it is perfect for this project.  It would be interesting, I think, in a few years to be able to look back to this journal and see what I read this year.  It could show a lot about myself by the things I chose to read.  Or not.  I just think it’s a really cool idea for a journal.

When you open the journal the first thing you will find is a bookmark that matches the cover.  There is a pocket in the back cover of the book with two folders in it.  One of these folders contains sheets of stickers.  The stickers include things like: stars, “love it!”, hearts, smiley faces, frowns, etc.  as well as stickers to indicate added notes in another section of the journal.  Then it is set up very much like an address book with tabs for each letter of the alphabet.  It set up so that each page is a book (I’ve also given on page per series and commented on the series as a whole rather than each book singularly).  There is a space for the Title, Author, Publisher, and Year Published.  As well as spaces for Date Read.  There are bigger sections to record any notes and quotes that were memorable from the book and a sections to record your opinions of the book as well as rate it.  After this section there is a section of tabbed pages for whatever you to make it.  Either extended notes from book reviews, lists of books you would like to read, etc.  Then there is a section of blank pages that can also be used for whatever reason.  And lastly, there is an Index section broken up alphabetically with page numbers to make finding a book easy.  I honestly may get a second Book Journal to keep record of the Non-Fiction books I like to read!

http://tinyurl.com/2uhlog5

Ok, so what does this mean? Well, the osteoporosis is getting worse. My bones are very thin and are shaped like bow-ties instead of rectangles, at least in my neck. I am going for a bone density scan some time in the next few weeks, and depending on the outcome I may be starting on Fosamax or Boniva, or something similar. The really sad part about this is there is no way I would be able to carry or deliver a baby with the state of my bones. I am heart broken over this. I have always wanted to be a mother.

The arthritis and bone spurs will continue to get worse and may impinge on the spinal cord, when and if this happens I will most likely have to have surgery to scrape away the spurs.

As far as the facet joints… I don’t know. From what I’ve been told there is nothing that can be done about it, and it will continue to get worse. I will become more and more dependent on the braces and my wheelchair.

Hearing all of this was like a slap in the face. I knew there would be some problems, but I thought I would have more time before it got this bad. Basically, I have the spine of a 65 year old woman.

My friends have their own lives to deal with, and their own troubles and things to deal with. They don’t want to hear about my illness, whether they say it or not. I know they don’t, I wouldn’t want to hear that my friend is dealing with so much pain… At least, that’s what I hope the reason is. Having a serious chronic illness that takes so much out of the person makes it hard to maintain friendships. I don’t go out much anymore because I’m always exhausted, too exhausted even to shower a lot of time. When I do go out with friends, I always have to cut the evening short because I feel weak, have a headache, etc., which also cuts short my boyfriend’s night as well. Most of the time, I can’t go out at all. I feel like I’ve lost a lot close friends because I simply don’t have the energy to do things. Not being able to drive doesn’t help either.

The worst, though, is when it’s late and I’m alone and I think about what’s going on. How I have no control over what is happening to my body. How, the fact is at this point, I’m not going to get any better. This is as good as it gets, and it will get worse. Maybe a few months from now, a week from now, or a few years from now. The fact of the matter is that it’s going to get worse. Currently, I’m having problems with my spine. It’s twisted and it only takes one wrong movement and it could paralyze me. That scares me to death.

This whole dysfunctional spinal family scenario was inspired by a thread of fellow EDSers experiencing this very same phenomenon in which they aptly described as “Divorce.”

They were right in the whole idea. What goes on in my body feels like a giant family reunion gone very, neurotically, physically, violently wrong. What I don’t get is, why is it so hard to find a decent person who understands roughly what goes on with EDS to make an appointment? I’ve been given handfuls of names and numbers. I’ve called them all. Some say that I have to actually have some sort of surgical diagnosis to see a spine specialist or I have to wait until March. MARCH????? Really? I understand that there is a shortage of doctors. I understand that they are in high demand. What I don’t understand is what do we do while we are waiting five or so months to see someone to tell us something we already know, then send us off to someone else?

I am so very tired. I am considering getting my own patient advocate or caseworker.